Human Emotion Photography Project: Karen & Brandy Living w/ALS

I’ve started a new project about documenting the spectrum of human emotions brought on by all sorts of human experiences. When I began my project, it wasn’t my intention to begin with such hefty emotions as those Brandy and Karen have inside them, but it just turned out this way–and I’m grateful. Brandy, my friend, and Karen, her mother, allowed me to visit with them, take photos of their day, and capture some of the emotions they experience on a daily basis.

Karen is a mother, a woman, a grandma, and she has ALS (amyotrophic lateral sclerosis)–Lou Gehrig’s Disease. It’s a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord, and spreads throughout the body. She was diagnosed less than 2 years ago. Brandy is a daughter, sister, aunt, girlfriend–and, now, full-time health care giver. I’m not an expert on the disease (if you’d like to know more, I suggest www.alsa.org), or Karen and Brandy, for that matter, but I was able to spend an afternoon with them and witness the beautiful life they have made out of the hand they’ve been dealt. In a small amount of time, I was overwhelmed by their raw emotions, compassion toward each other, and their openness about their experience with ALS. Karen cannot move her arms, legs, or body, and uses her eyes and a special computer to communicate in written word since her speaking muscles are also affected; Brandy gives her the care and attention she needs throughout the day in between health care workers: nutrition through a tube, water, wiping away a tear, chap stick, blankets, companionship. Karen also suffers from a severe case of the bulbar effect, or emotional incontinence, and her emotions are exaggerated to the extreme in unpredictable ways. She may find something funny and laugh hysterically, or the opposite; something may be sad and makes her cry hysterically with no explanation.

My goal with this project is to show through visual images a broad range of natural, real emotions and life experiences, with very little words or guidance. I want the images to speak to viewers, to tell a story, to invite others into the experience and share our humanity. As you view, my hope is that you’ll begin to interpret the wide set of emotions and feelings that would undoubtedly arise in these lives. With that in mind: